Day 176: Letter to my past self

Dear past Angela,

Until now, you have lived in the world of youth. You have had very few physical problems and have believed yourself invincible, as all young people do. You have abused and ignored your body, sometimes in a very purposeful way, and now I have to deal with the consequences.

You thought the graph would always go up and to the right. But now I am able to see that no one has that happen forever. You thought that you would have plenty of time to start and restart your life, to fix all of the things, to do all of the things. The world was always full of possibility, whether or not you wanted to reach for it.

Now reaching is hard, physically and metaphorically. And feel you wasted your opportunities. I hope I won’t always feel that way, but for now I am angry at you. Why did you hide this? Why didn’t you fix it? Why couldn’t you have prevented it from happening? You never gave a thought to a future in which you might get old, be less capable, or have needs that you couldn’t deny. I’m the one who has to deal with that.

I’ve been passed this baton from you. It is full of your vague and unformed dreams of success, meaning, and triumph. Maybe you would write or do something amazing through your academic work, or your personal work, or you would have power to change and improve things, or you would think great thoughts, or you would be a success.

As I look at this baton, I wonder why I am holding it. What was I going to do with it? Perhaps that is happening because of the illness that is also part of the baton. When I turn to a task or an idea, I do often lose my place, so perhaps I have just forgotten my purpose. It nags at the back of my mind that should perhaps be running with this baton, but I am tired today, and I know I will be tired tomorrow too.

Then I face the cognitive issues, fatigue, and problems using my body. Those issues grew in you and I can’t ignore them any more. If I am still running a race, I can see that I am not going to win. So I am taking a break. And in my break, I am starting to grow other ideas meaning that seem very different from yours.

I started this letter wanting to yell at you because I am the one who is paying the price for your lack of vision. But now I see that I am really writing a letter of apology. I won’t be fulfilling your dreams or working through your plans. I’m sorry. I’m going to have to do my own thing.

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Day 166: Dancing

I have been struggling to do PT and keep active. I get fatigued easily and I find PT terribly boring. I don’t have a car and walk many places in the city I live, so it is not that I don’t exercise at all. But I really do find PT boring so it’s hard to get myself energized for it.

Today I got an idea. I love music. I love dancing, although following steps is hard for me. Balance is hard for me too. But, hey, dancing can help me work on balance! So I found a video of aeobic exercise for elderly people to dance music. It’s a little hard, but not too hard. It was fun and it didn’t tire me out as much as straight-up PT.

It gave me other ideas for having fun. My son has a balance board and it is way to hard for me to balance on but if I hold onto something I can balance, and it’s fun. I could hula hoop. I can think of lots of things that don’t feel like boring work, and thus I can fit in more challenging physical activity that helps me with physical things I struggle with.

Day 157: Wrestling

Today at my kids’ Hebrew school, we had a conversation about the story of Jacob wrestling with the angel. In case you don’t know it (or forgot it), the story goes that the night before Jacob was going to meet his brother Esau after a long separation, he had a weird experience. He found himself alone at night and some person came up to him and started wrestling with him. Jacob is able to bring the battle to at least a draw and demands a blessing. He gets a new name and he later notes that he has seen God, which is why this wrestling scene is often referred to as wrestling with an angel. The person/angel also pokes Jacob in the hip which makes him limp.

Today when we discussed the passage I was struck with the connection with disability and the physical act of limping. Most days, I have a limp and my limp will only get worse as time goes on. Is the injury God’s way of getting even? And by asking that question I am asking the corresponding question in my own life. Does my limp represent a reckoning for my own faults or bad behavior? Often I feel that it is. MS is my own fault, even if I can’t quite see why. I didn’t take enough vitamin D or take good enough care of myself, thus God or the powers of nature cursed me.

Of course, the other possibility is that the limp represents a blessing, a blessing that Jacob forced out of God’s representative. In this version, wrestling with God is a good thing. “God” isn’t an easy concept and wrestling with that concept shows strength and intelligence. Could this be true for me as well? My limp represents my struggle with MS and shows my own strength. When I lose words or get confused when I am cooking that shows my intelligence. When I feel like MS has a hold of me, I too can name the place I am wresting in honor of my struggle — “For I have seen God face to face, and yet my life has been delivered.”

Day 150: Back to writing

Wow, it has been 121 days since I  found out that the diagnosis for MS was definite. Since then I have started to see an MS specialist, who verified my suspicions that it looks like PPMS. I also started on Ocrevus a couple of weeks ago and have a second infusion coming up this week. I’m on leave from work right now, trying to get my shit back together and figure out how to keep going.

Right now, I am a little wobbly. Physically wobbly, always, but I mean more emotionally wobbly. I’m starting to get used to a new identity as someone with a chronic illness, and that actually feels OK. I think for years I have been completely ignoring how I feel physically and fiercely pretending I’m fine. Meanwhile, I am beyond exhausted and my family has been suffering for it. I haven’t been able to give much attention to them because just surviving was taking everything I had to give.

Being off work for now, I have a bit of breathing room, and that’s nice. I expected to be wildly depressed without work, but so far that is not happening. In part, I think I’m doing OK for now because I have told myself that Job #1 is taking care of myself, Job #2 is taking care of and spending time with my family, and Job #3 is figuring out what my life is all about now.

The biggest thing I am struggling with is feeling bad when I feel OK. I have a terrible illness, bad enough that I am taking time off of work. I really think that means I should feel awful every moment of every day. I can’t appreciate times when I feel better because I worry those times mean I am a lazy faker. I’ve got to find a way to shake that off, but right now I’m not quite sure how. I started by trying to see if anyone else felt that way, and I found this writing by someone who does, so it’s not just me!

Day 29: At least I know

Today the results from the spinal tap came back and the diagnosis of multiple sclerosis is confirmed. I am happy that the confirmation came back because I was tired of living in limbo, but now I have to get to the business of crossing the bridge that the diagnosis represents. Right now I feel like me, but crappier. I don’t move as well, I am not as smart, and I’m just like me, only not as good. I have to find my way through to shifting this view and seeing myself as I am, but I’m not quite there yet.

I have been thinking a lot about the importance of music. Of course, my mind is also bending toward ways to tackle MS, hence this article was interesting to me!

Day 23: Bedridden and talking with kid #2

Well, spinal taps officially suck. I’m not even that bad off. My headache is minor, but I feel like ass, I’m tired and slightly dizzy. I’m staying in bed to slay this dragon and I am terribly bored and a bit lonely as everyone is off doing other things.

In other news, we talked to our 9yo son last night, and it was about as awful as we thought it would be. He cried himself to sleep last night and this morning refused to touch me because he might catch MS. He made fun of me for all of the ways that I might become incapable. He insisted that we are lying to him in everything positive we said. But bit by bit we made some progress. He watched a TV show with me and played a game with us. I read a brochure about MS to him and he listened to some of it. He is chatting with his therapist now, so I’m guessing some good will come of that as well.

Day 21: Spinal Tap and telling my daughter

I had a spinal tap yesterday. I am hoping it is the last of the major test I have to do at least for a while since I feel a bit overly prodded and inspected over the last few weeks. The spinal tap was actually fairly easy (compared to my fears of how it would be). I spent the day resting, hoping to avoid a big headache. So far so good, but I do have a back ache this morning. Resting also a good excuse to watch a lot of “The Walking Dead.”

On Monday, I had a CT to look at the vessels in my brain. This was to rule out CNS vasculitis. With that test, I think we have done what we can to rule out everything that is not MS. Yesterday I found out that test came back fine. No issues with the vessels in my brain, which is a big relief to me.

My hope is that spinal tap will confirm MS. It seems like a strange thing to hope for, but having MS confirmed would mean clarity and moving forward to explore treatments. The results of the spinal tap should be back in a week or so.

My neurologist is also sending me to an MS specialist for a second opinion (not that I yet have a definite first opinion!). Additionally, I have a followup in a couple of weeks with yet another neurologist  that will have all the notes on my case and can review my options after the spinal tap comes back, and that’s because my neurologist is about to go on maternity leave.

Additionally, I need to get in touch with my PCP for an appointment with a urologist. So maybe I have made it through the bulk of the tests, but no end to new and exciting doctor’s visits.

With the CT scan coming back, we felt like it was time to start talking to our kids, so my husband told my daughter about the probable diagnosis last night. It went well, my daughter had a million insightful questions, as she always does. She came home and told me that she was glad it wasn’t cancer. I  am so glad she is in my corner.

The next step is telling my son and that will be a much more difficult situation.

 

Day 16: Healthy Spine

On Tuesday I had an MRI of my cervical and lumbar spine. I don’t really seem to have any claustrophobia so it was fine, except for the fact that I forgot to remove my pony tail and by the end of the double test (one for spine one for lumbar) my head really hurt! It has been hard to navigate work when I am on edge about receiving bad news. My doctor said she should get the results on Wednesday and that if I don’t hear from her I should call her. I worked from home on Wednesday because I didn’t want to hear the confirmation of MS while I was at the office.

But that’s not what the call was like. Basically I have a normal spine for a 47-year-old woman (which is what I am). Some issues, but nothing that would cause the symptoms I have had. I suppose that is good because who wants to have lesions on your spine, but does leave me in limbo.

So on Monday, I will go in for a CT of my brain, looking and vasculature. This is, I think, to rule out CNS vasculitis, which is rare but could be a possibility given my brain MRI. This will be the third picture of my nervous system in 3 weeks. I have to not eat anything and have only clear liquids Monday before the scan. Then Wednesday I will have a spinal tap. I am hoping one of those gives some real clarity so that I can get to the other side of this diagnosis party.

Interestingly, Thursday was a great day at work and Friday wasn’t too bad. I was able to put the MS to the side for a bit. The people I work with know I am doing something medical and they are being great overall, but I am finding it frustrating not to be able to talk to people. Of course, right now what would I even say?

Today walking was a little rough as was the tremor in my right hand. I blame the fact that I went to a cold and rainy soccer game followed by a cold and rainy football game.

 

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